Approximately one million people live with multiple sclerosis, but every one of those people has a unique experience of living with the disease. If you were recently diagnosed, these MS tips can help: from how to find treatment, to where to go for extra support.
While no multiple sclerosis journey is the same, there are MS tips that can make a new diagnosis easier to navigate.
Knowledge is your best friend when it comes to navigating an MS diagnosis. Thanks to advances in healthcare and technology, people with MS are living full lives. Knowing about your disease and how it impacts you can help you better communicate with your healthcare team and loved ones on how to best manage your symptoms. If you have recently been diagnosed with MS or want to know how to support a family member or friend, here are 7 MS tips for managing your diagnosis.
1. Track your symptoms
Multiple sclerosis can change over time, becoming quite unpredictable. It’s important to monitor yourself and report anything new or strange to your healthcare team.
It may help to keep a daily log of your symptoms, noting the time, frequency, and severity of the symptoms you experience. Being able to identify patterns or worsening symptoms earlier can prevent additional pain and discomfort. Plus, tracking MS symptoms will help your healthcare team find appropriate ways to manage your diagnosis before it progresses further.
2. Start treatment as soon as possible
Even in the early stages, multiple sclerosis can cause irreversible damage. Permanent neurological damage may occur in people with progressive MS when the myelin covering surrounding nerve fibers is destroyed.
If you are experiencing symptoms of MS or have been recently diagnosed, it’s essential to begin proper treatments to manage your disease as soon as possible. Cognition begins to decrease at the onset of MS and there is evidence to suggest that cognition may be affected 5-10 years before clinical manifestation. Current medical research suggests that starting treatment around initial symptom onset gives patients the best chance of reducing long-term disability.
3. Avoid MS triggers
Stress or overheating can make MS symptoms worse, so try to be kind to your body.
There is no firm scientific proof that stress can worsen symptoms of MS, but there is a link between long periods of stress and heightened symptoms or relapses. According to the Multiple Sclerosis Trust, there is evidence that stress management can slow down the development of brain lesions and damage to new areas of the brain and spinal cord.
Heat and humidity can also worsen MS symptoms. That’s because elevated temperatures further limit already damaged nerves from sending signals. Hot baths or showers, exercise, and sunbathing have been known to cause blurred vision in some people with MS—known as Uhthoff’s phenomenon. Some people who experience Uhthoff’s phenomenon may also have balance issues, pain, fatigue, or cognitive symptoms.
Do your best to manage stress levels̶—meditation, light exercise, and deep breathing can all be beneficial in preventing an MS trigger. Avoid spending extended time in the heat or humidity. If you are outside or in the heat, try to stay in shaded areas or take frequent breaks indoors to cool off.
4. Focus on your sleep schedule
MS has a negative impact on sleep. It’s not uncommon for people with multiple sclerosis to experience nighttime leg spasms, narcolepsy, or insomnia. Quality sleep is critical for brain function, so it’s important to address sleep issues with your doctor or medical team.
Some find it helpful to limit caffeine use in the afternoon and evening and to maintain a consistent sleep schedule. Avoiding drinking fluids closer to bed can also help reduce the need to urinate throughout the night.
Sometimes, medications may be prescribed to help improve your sleep. Your provider may recommend melatonin or prescription sleep aids such as eszopiclone or zolpidem. For MS patients with narcolepsy, modafinil can prevent excessive sleepiness throughout the day.
5. Incorporate exercise
Frequent exercise has been shown to improve strength and may lead to better functioning of the bladder and bowels. High-impact activities aren’t necessary to get your body moving—swimming, yoga, and gentle walking are all great options for people with MS.
To help prevent exercise-related injuries, make sure to stretch before and after movement, and drink plenty of water. You should always talk with your doctor about your exercise plan. They will be able to provide MS tips for exercise and ensure you are moving your body safely.
6. Decide who needs to know about your MS diagnosis
This is your life and your disease, and you are in no way obligated to share it with anyone you aren’t comfortable sharing it with. Many people seek support from family and friends when diagnosed with multiple sclerosis. However, only you can determine who can offer you support, and those who may cause you further stress.
You may choose to include a trusted family member or friend to accompany you to appointments. You also have rights under the Americans with Disabilities Act if you decide to tell your employer about your diagnosis. Whomever you choose to tell, seeking support from those who can offer positive support will make managing your disease easier.
7. Find the right doctor
An MS diagnosis requires lifelong management, so you’ll want a doctor you can trust and are comfortable working with. If you need help finding the right doctor, the National Multiple Sclerosis Society has a resource for finding MS doctors near you. They also have other great resources and MS tips.
Consider commute distance, or if your provider offers telehealth visits. If you are receiving infusion therapy for MS, determine where you would receive treatment. Ambulatory infusion centers are often a comfortable, more private alternative to hospital infusion centers.
FlexCare provides outpatient infusion therapy for multiple sclerosis treatment in locations across Oklahoma, Arizona, and Alabama. Our infusion suites offer comfortable amenities, walk-up parking, and convenient hours. Contact a member of our team or ask your provider to send your infusion therapy referral to FlexCare Infusion Centers. We would love to help you feel better.